I spent a bit of time yesterday looking at this website, and found it quite uplifting. I have decided that if I have to live with PD or whatever this dis-ease is, I may as well give it my best shot by being as healthy as I can be and let the meds fall away if not required. We are whole beings and to think that any single part of us can be separated from the rest of the package is just silliness. Yet that is the basic view of western medicine. Soon there will be a different specialist to treat our left foot from the one that only treats right feet! I read through the pkg for the seminar or whatever, and found it very typical of other seminars I've attended. The $800. covers you and your caregiver, several meals, hotel accomodation and all the workshops. The pricey item on the menu is the nutrition counselling which is not live, but telephone (you'd think they'd use a computer hook up) Still for an hour of individual help...plus another 15 minutes (and I'm sure you do your questionairre first, on your own time) I am going to investigate further because everything thats being offered here is of value in my opinion.

I'll post again when I know more.

Hi Fiona,

I'm not upset - you posted the link and opinions were expressed - nothing more really. This man is claiming he cured his pd - that's almost a miracle and he has no proof that it would work with anyone else. He is charging more than the average disabled pwp can afford.

Regarding our meds - I am grateful to have sinemet. I've been told from the very beginning that it would turn against me. It was clearly laid out. I hold researchers and bio techs responsible for not coming up with more innovative treatments - for competing and withholding - I wouldn't put anything past them.

But if I didn't have sinemet - i'd be helpless. I'm not going to jeopardize the fine tuning and balance i have right now by taking various powders and formulas that claim to replace sinemet. i'm open to whatever works and appreciate the information that comes into this forum. I hope like hell someone finds something that works. But i"m too advanced to play around with this balance. At 20 yrs of pd, I'm still functional.

This isn't a contest - modern vs traditional. All avenues should be explored. I've come around to thinking that stress is #1 cause of illness combined with poor nutrition and environmental toxins. But I can't afford to pay $800 over the internet looking for a miracle cure and think his method of getting business is at the very least tacky, and quite possibly, in scientific terms, is no more than a clinical trial would be - with the participants paying for it.

It's people I don't trust. THe scientific method, when done correctly and honestly, is the best system we've got to work with. Data is a must, and people shouldn't have to pay for it. I can't afford to run out and buy all the things recommended on this forum. I read, follow the info, and when something comes up that I feel is right, I'll give it a stab.

Disagreement is not the same as being upset. If the guy comes up with a cure, I'll be among those in line for his treatment. Someone else can pay the $800 to find out what it is.

I am not upset at you at all Fiona, one person's trash is another's treasure, or something like that.

paula

Hey Paula - no, I'm with you on many points. And I should have been more specific about the upset part - trying not to single anyone out, and winding up with people feeling singled out! oh, well.

It's an enormously personal decision about whether to or not to take whatever meds, and I know a huge variety of factors come into play. I don't blame others for making other choices for themselves. But is it a contest between mainstream and alternative? Well, not a contest, but try telling most neuros that you want to try something different - not such an easy task to mediate between all these things for yourself, and the alternative is still fighting to be acknowledged because if no one can make a big profit from it, then studies aren't likely to be funded. I mean, we all know this, right? I know there are some exceptions like exercise studies and the like...

But about the clinical studies, of course part of me feels that you're right, but when you consider the recent data that the clinical studies funded by the pharmaceutical companies are statistically five times as likely to have results favoring the company's product....well, I don't know how to evaluate all this data.

But if someone offers what they think is a curative process, you have a right to pursue it or not, to accept their explanations or not. If you don't like something without clinical studies, great, don't take it on. But someone else may have another way of looking at it, and other priorities...

Fiona, I was a little hasty with my reply as I have had a chance to look around the website you posted and there is lots of good information. I was cranky this morning because I had a dentist appointment and also felt ripped off that I was only reimbursed less than a quarter of my medical expenses when I have coverage with the Premium Extended Medical Plan. If they can find a way to get out of covering treatments and drugs that are not generic you pay through the nose. It is not very encouraging. As you brought up we don't balk at the cost of supplements, yoga etc. I was not upset, maybe judgmental, because of the amount of money I do spend on a ongoing basis. I know that there are many who could not afford what I have the luxury of spending. It is those that I feel bad for. Once again thanks for the post.

I hadn't even thought of any sort of naturopathic type treatments for my dad's PD , so i liked the info if just for that reason.

But just getting parents & other family members to look at alternative health stuff is a challenge anyway. LOL

They think MD's know everything
sigh

My experience with Sinemet withdrawal

This is one subject about which I cannot remain silent. As I’ve mentioned in the past, I am 51 years old and have had PD approx. 20 years, not correctly dx’d until 17 years ago.

A while back, already in a pretty advanced state of PD, I was becoming increasingly desperate. At that time, the DBS procedure had not yet been approved by the FDA. I went through the lengthy protocol process to be approved as a “good candidate” for the surgery. Plenty of tests, doctor visits and weeks later, I was well on my way to being approved as an excellent candidate. My surgery date was even set and I was only weeks away from the DBS procedure with only one doctor left to approve my candidacy. (This was a type of peer review, like a second opinion). He and his senior colleague examined me and ran tests for 4 hours! Prior to that day, the longest doctor appointment I had with any neurologist was approx 30 minutes.

After spending half a day with me, they each separately concluded that I probably did NOT have PD, and RECOMMENDED AGAINST the DBS procedure for me. They believed the symptoms were caused by STRESS. I did experience the first PD-like symptoms during an extremely stressful period of my life. I was in a failing marriage, with a 2-year-old baby, working in a business approaching bankruptcy, my career in question, and aging parents to consider. So, the doctors concluded that my PD-like symptoms were stress-related, and that I was misdiagnosed. Furthermore, they felt that I had then compounded my health problems by becoming addicted to Sinemet. They recommended that I start a very gradual detox plan. Then, after detoxing, if there were any “real” underlying problem, they felt it would come to the surface, no longer being “masked” by all the med’s. After careful deliberation, I agreed, recognizing that I could always go back to the DBS some time in the future.

I had mixed emotions, of course. On the one hand I was disappointed. I was no longer only weeks away from “the fix” to my problem. On the other hand, maybe I didn’t have PD at all. Maybe at the end of a “long and difficult” withdrawal process there was a CHANCE at a normal life!

By the way, these doctors who spent half a day with me are very highly regarded. They work in one of the most prestigious hospitals in NYC. They are not only neurologists, not only movement disorder specialists, but “Parkinsonists!” They spend 100% of their time working solely on Parkinson’s patients and Parkinson’s Disease, Parkinson’s Syndrome, Parkinson’s Plus, Parkinsonism, or any other neurological problem that had Parkinson’s in its name!

It would take too long for me to describe all the symptoms, lack of symptoms and other oddities in my condition, which led them to the conclusion that I did not have PD. I’m afraid I don’t have enough quality “on” time, patience or energy to explain it all right now. I will mention one example in just a few paragraphs. Also, since we are all different from one another, my personal experience with PD is unique to me, as your experiences are to you. We experience different symptoms, speed of progression, response to various meds, side effects to these meds, and so on. So the reasons for their diagnoses are different for each patient.

Suffice it to say, they made a very compelling argument. It was compelling enough for me to make the decision to take their advice. I began my journey toward what I hoped would be a normal, healthy life. Fortunately, I was young, very athletic, and somewhat of a health-nut. I have taken pretty good care of myself and didn’t abuse my body. I felt confident that I would come out the other end of this nightmare a healthy, happy person.

The detox process was very painful, physically and emotionally. I slowly titrated my daily Sinemet intake down from a one-time high of 2400 mgs (only at this peak for a few months; more typically at approx. 1300-1500 mgs.) down to 300 mgs! I continued taking several other add-on meds…. agonists, for example.

At 300 mgs I was miserable and suffering terribly…appearing much as you would expect an advanced stage PD patient to appear on only 300 mgs of Sinemet each day. I spent on average 20 hours each day in the “off” state, needing full-time attention. I could not walk. I could not feed myself. I could not get off the bed or out of a chair without help…a lot of help. I was helpless, sitting in front of the TV all day with my nurse’s -aid by my side.

The four remaining hours of the day, I was “on.” These periods usually occurred shortly after taking one of my Sinemet doses, as you would expect. It gave me just enough time to bathe, change my clothes, eat and exercise. During this “on” time I was symptom-free and side effect free: no dyskinesias whatsoever. I should mention that this total of four hours was not a solid block of time. It was broken up into roughly ½ hour- to 1½ hour- periods at a time, maybe 3 or 4 times in a 24-hour cycle. It was a living nightmare!

Over time, I have to admit, that I did notice very small changes in my condition. I believed I was witnessing the signs of improvement. For example, (I told you I’d give you one!) when I was in the “off” state, and could barely move, my aid would stand me up. She did most of the work. Painfully and slowly, I would shuffle to an open space. Once in a while, standing there on my own, concentrating extremely hard, I would suddenly begin to RUN…SPRINT, actually! This would only last for several seconds. I think my record was approx. 20 seconds. Nevertheless, how could this be? Either I had a dopamine deficiency or I didn’t, right? Why, on those occasions, was I able to run when I could not get up and walk on my own? This is just one example of the strange inconsistencies that gave me hope. (I later learned that many of us have these peculiar, inexplicable, events.)


I remained on this program for several years, desperately hanging on to the few anomalies and miniscule improvements that made me think I might not have PD. Determined as I was, the minor changes eventually were overshadowed by the suffering. I could not take the punishment any longer. I could not take the next step down to 200 mgs. Even the doctors admitted that I should have seen a lot more improvement by then, and that, at 300 mgs, I probably was no longer strongly addicted to Sinemet.

I never saw any real, tangible benefits from this detox process. There was no further explanation. After all the sacrifices my family and I made going down this path, it was time to accept that I had PD… or something that behaved almost exactly like it. It really didn’t matter what label you put on it. I have a PD-like problem which responds well to the PD meds.

That was a few years ago. Today, under the care of a different doctor, I am receiving the “accepted” treatments for PD. I was prescribed the typical cocktail of drugs that we are all familiar with. As expected, I responded to the meds as I had in the past: symptom relief, wild dyskinesias, “on/off” syndrome, and “freezing” throughout the day. My quality of life is quite poor, but compared to the previous few years, I was much better off, even with all the symptoms and side effects in full-bloom. Now, with a whole new world of treatments and potential future options, I am considering my future weapons to fight this nasty monster. In the meantime, I continue to keep in tip-top shape, pray and try to make the best of a bad situation, one day at a time.

This was just my own personal experience with Sinemet withdrawal. It’s something to think about. Your results may be different, but I wanted to share my experience with you because I think there aren’t too many of us who have gone through this process. I thought you should hear from at least one. This took me 2 days to write…sorry for the delay. I hope it helps in some way.

Best of luck, whatever you decide.

...as I tell those who tell me how brave I am, if I could outrun this SOB I'd already be gone. So, I will salute your toughness instead.

One thing that anyone wanting to reduce the drugs may want to know - the mucuna definitely could have a place in managing that. Be aware that you might be exchanging one drug for another, but I don't think so. But in my experiments I have caught myself cutting back far too quickly. For example, I stopped 24 mg of Requip cold without changing the Sinemet dosage. After two days of that I noticed restless legs that night. I gave myself a good talking to and am on a more reasonable titration plan now.

2400 mg of Sinemet? Whew! You are one tough hombre kk13.

...for the kind words, Reverett123. I'm not so tough...what choice do we have? Like they say (whoever "they" are): Parkinson's ain't for sissies!

By the way, just curious and way off-topic,What makes a member a junior member or a senior member? I'm not looking for a promotion, just wondering what that's all about.

Thanks again for your response.

But seriously....

I think it is automatic and either based on time since you registered or number of posts.

kk13, whoah, what a story. thank you so much for taking the time and making the effort to tell us about your ordeal. And yes, I have heard a couple of similar stories before - I so wish I had heard them before I launched myself into this whole levodopa therapy.

It does feel like a mountain that any of us are facing with this either idiopathic or secondary drug-induced Parkinsonism or whatever the true nature of this beast is. However, I am still hopeful that there are things that haven't been tried and things that could help. I am with Rick on the mucuna thing - just a month or two now, and it's hard to explain how very much better things are for me and how I think this is leading to a somewhat restorative path, wherein other things could now start to help that didn't before. I am just so devastated that it is not routinely part of the priority ways to address PD, and don't understand the lack of interest in it - to me, it is so clearly superior...although still a drug, I know, but a drug and something else...

God bless you, kk13, for putting your life back together. I wish you the very best, and hope that things may improve for you. You are very strong to have endured what you have and to be willing to share it with us.
Fiona